Recent content by LizF

Thank you for all the good wishes, I'm slowly regaining some strength. Laurie, the surgeon who eventually removed the tube did assure me that j-tubes were a possibility, in case I feared there were no other options. It was horrible, but I was lucky in so many ways. XO

I'll keep this brief for those with reading challenges, feel free to ask questions in the comments if you like. I went into hospital on Dec 18 for a simple PEG placement. The doctor aborted the procedure as the light was not showing through my stomach, giving him a safe "landing site"...

Hi, Jenksky My final diagnosis of ALS was based on my muscle biopsy, but I did not receive the results of the biopsy until I sat with the diagnosing neurologist. So, I'm sorry I cannot interpret yours for you. I do know that "Denervation atrophy with associated reinnervation" can also point...

Lol, I'll be careful ;) Happy Holidays!

So, had another test and FVC is now 64%, I'm scheduled to have PEG tube placement done next week. I'll be hospitalized 3 days, and then hopefully no issues at home. I have no issues with swallowing, feeding myself, or weight loss, so can focus on healing and learning how to use it. I found the...

I remember the neurologist who confirmed my dx telling me "I know how you feel". I looked at her and said sadly "no, you don't, you really don't". She looked shocked, and little embarrassed. I really think that to fully grasp such a complex disease as ALS, you have to live it. There are SO many...

Mike, agree with everything said above, plus this: I presented at a walk-in clinic to a busy GP that I'd never seen, with weakness (NOT TRAVELLING) in legs, with a few other symptoms. I had an EMG less than six weeks later, and I learned it was because the initial doctor was concerned enough...

thanks for sharing Kristina! I've had moments at which I can only laugh too--it's laugh or cry, and laughing is much easier on the soul, the brain cells, my CALS, everything :) Here's a link to a silly moment involving a commode stuck to my butt (hope it's okay to post links to personal blogs).

Congratulations Al! That's fantastic news xo

I'm fairly private, and introverted, but I'm a writer and have found that putting it all out there in my blog has helped me cope. And somehow, that's spilled over into my off-line life. So, when I get the questions, no matter how sombre they're delivered, I answer cheerily "I'm fine, thanks for...

I have an electric blanket, and a smaller electric throw for my lap when I'm in my chair, it's fleece lined and cozy even when not turned on. And I also ordered leggings from Silverts and they are fabulous, I love them. I went up a size, so they're not restrictive at all, and keep me toasty. I...

I take escitalopram (10mg/daily), and have Ativan for really terrible times which thankfully, are few and far between. I also practice self-hypnosis, after seeing a hypnotherapist for fear, mindfulness & gratitude, and continue with the cognitive behavioural therapy techniques that I've used for...

I can only offer virtual comfort and hugs, and an opinion-you mentioned "self-comfort" and that your wife doesn't take anxiety meds. I wonder if this compulsive water drinking is an expression of that anxiety? I know I have taken to doing silly little things just because I still can, over and...

Thanks for the input! To answer some questions from above: I don't see a neuro, all my follow up is with my GP and respirologist (who handles the decisions re surgeries). He is "the guy" for ALS patients where I live, and he's conservative and not necessarily abreast of the latest in...

After quarterly spirography testing, my FVC has been 96% + since diagnosis in June 2016. However, my most recent test (last week) shows I have dropped to 71%. My respirologist is concerned, as that's one big drop, and has booked me for another test in December instead of waiting quarterly. He...